Feb 10, 2010

5 Common Irks CF Patients Put Up With

I have Cystic Fibrosis or CF. It's a disease far too many people know far too little about. Here are some of the irksome things I and many like me often put up with that are unique to people with diseases. (I know most of the time people are trying to help, but too bad!)

The Home Doctors
I don't have one doctor who looks after me, I have a team of them. Their leader is a specialist in CF and respiratory illness. She not only spent 10+ years at university, she went on to study and focus her considerable scientific knowledge on my specific disease. So when some taxi driver, tram passenger or dude with an arts degree gives me advice on my sickness, it really grates my cheese. Thanks pal, but I'm covered!
The Home Remedies
I'm on a litany of drugs that keep me healthy and alive. I take over 80 tablets a day.  Literally. There are pancreatic enzyme replacements extracted from porcine digestive tracts, inhaled genetic therapy that breaks down bronchial mucousal DNA and histamine inhibitors focused on gastric acid neutralisation. But yes, I'm sure your suggestion of cutting out milk and instead drinking honey and lemon in some warm water will do just fine.
So this one's kinda funny. Most people have no idea what CF is. Some have a hazy notion they may have pulled from a TV movie or a distant relative, and at best they remember the general thrust of the illness. Others, when I tell them I have cystic fibrosis, say, "What, the old lady bone disease?"
When I was young, admission to hospital was always at the Royal Children's. I was there fairly regularly, once or twice a year for two or three weeks at a time, and one visit I was lucky enough to be there for the opening of the Starlight room. This was a mythical cave of fun: all the current consoles, books, TV, lego, toys...awesome. The CF kids from the two respiratory wards were allowed to be the first ones in, snuck through before the official opening. Our recreation officer took us all down, buzzed out of our brains with excitement. When we got there, she went ahead, spoke to someone then came back dejected. She informed us the cancer ward children had beaten us to the punch, and we weren't allowed in because TV camera crews were in there covering it. Devastating! That day I learned from the nurses that there's a rivalry between the CF kids and the cancer children, and it's a resource war: charity donations, funding, equipment, sympathy. So curse you cancer kids, curse you!
A Glass of Water
I cough. A lot. It's part of the deal, and I do it because my manky lungs are trying to get nasty, sticky mucous up and out. It's got nothing to do with my throat, my stomach or dehydration...yet everyone always seems to tell me - after hearing me cough a few times - that I should have a drink of water. Yeah, you're absolutely right! Water going into my stomach! That'll dislodge my phlegm, dry up my mucous, correct the genetic delta f508 mutation and put me right on track! Why didn't I think of it before!? All these years I could've been drinking water and curing my disease!
That's it! Does anyone else have any I've missed? Are there any irks you suffer due to your own illness, or even because of a specific job you hold? Leave a comment!
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